tortuous stricture in common bile duct

[Guest guest]

My son (who is 12) has more seemingly adult like symptoms/consequences

of PSC than most of the kids I know so I thought I would ask this here.

A brief history of his bile duct history...

13 ERCPs for partial or total obstructions in his common bile duct

stents replaced frequently for years during the ERCPs

tons of sludge/stones each time he had the ERCPs

initial MRCP and first ERCP they found 2 very tight strictures and a

grossly dilated duct

last ERCP he had an extra big sphincterotomy cut done to try and

establish bile flow after so many obstructions and stents that kept

getting clogged after only a few weeks

the huge sphincterotomy along with higher doses of urso to thin out

bile, new antibiotic and probiotic regimin and g tube feeds have help

the quality of his bile somewhat

He also has some complicating factors- he has severe short bowel

syndrome (most of his small intestines gone, he has no ileocecal valve

and virtually no ileum (for bile salt absorption) so he has really

poor quality bile- thus the need for urso, antibiotics and questran)

He has had severe/acute pancreatitis 3 times and I suspect now has

chronic pancreatitis..not confirmed for certain...long story...

The recent finding found with the latest and greatest type of MRI

machine with all the Philips reps assisting to get some really good

images...showed the really obvious (even to my relatively untrained

eye) dilation and stricture that twisted around (were called tortuos) .

The GI called me himself within a few hours of the study, after having

looked at the films himself with the radiologist- so not a good sign.

I am wondering if anyone has had problems with chronic pancreatitis

that has caused a similar problems. The initial research I have been

doing seems to point towards pancreatic problems causing this or

caused by this ??. One expert we saw on biliary/liver disease- he

actually 'wrote the book' on pediatric liver disease (Dr Balistreri)

thought my son would need a permanent external drain for bile flow but

the former GI didn't want to go there.

Any thought/experience/ideas on what a tortuos (twisting kink)

stricture in the common bile duct could mean ? The duct was quite

obviously dilated above the stricture.

Lori

[Guest guest]

Lori,

Does your son still have his gallbladder? My

problems with sludge and clogging have been " solved " (or seem to

have) after my gallbladder was taken out. The sludge was coming from my

gallbladder.

Regards,

Chaim Boermeester, Israel

From:

[mailto: ] On Behalf Of wildwildtrips

Sent: Thursday, November 20, 2008

17:49

To:

Subject: tortuous

stricture in common bile duct

My son (who is 12) has more seemingly adult like

symptoms/consequences

of PSC than most of the kids I know so I thought I would ask this here.

A brief history of his bile duct history...

13 ERCPs for partial or total obstructions in his common bile duct

stents replaced frequently for years during the ERCPs

tons of sludge/stones each time he had the ERCPs

initial MRCP and first ERCP they found 2 very tight strictures and a

grossly dilated duct

last ERCP he had an extra big sphincterotomy cut done to try and

establish bile flow after so many obstructions and stents that kept

getting clogged after only a few weeks

the huge sphincterotomy along with higher doses of urso to thin out

bile, new antibiotic and probiotic regimin and g tube feeds have help

the quality of his bile somewhat

He also has some complicating factors- he has severe short bowel

syndrome (most of his small intestines gone, he has no ileocecal valve

and virtually no ileum (for bile salt absorption) so he has really

poor quality bile- thus the need for urso, antibiotics and questran)

He has had severe/acute pancreatitis 3 times and I suspect now has

chronic pancreatitis..not confirmed for certain...long story...

The recent finding found with the latest and greatest type of MRI

machine with all the Philips reps assisting to get some really good

images...showed the really obvious (even to my relatively untrained

eye) dilation and stricture that twisted around (were called tortuos) .

The GI called me himself within a few hours of the study, after having

looked at the films himself with the radiologist- so not a good sign.

I am wondering if anyone has had problems with chronic pancreatitis

that has caused a similar problems. The initial research I have been

doing seems to point towards pancreatic problems causing this or

caused by this ??. One expert we saw on biliary/liver disease- he

actually 'wrote the book' on pediatric liver disease (Dr Balistreri)

thought my son would need a permanent external drain for bile flow but

the former GI didn't want to go there.

Any thought/experience/ideas on what a tortuos (twisting kink)

stricture in the common bile duct could mean ? The duct was quite

obviously dilated above the stricture.

Lori

[Guest guest]

Lori,

Does your son still have his gallbladder? My

problems with sludge and clogging have been " solved " (or seem to

have) after my gallbladder was taken out. The sludge was coming from my

gallbladder.

Regards,

Chaim Boermeester, Israel

From:

[mailto: ] On Behalf Of wildwildtrips

Sent: Thursday, November 20, 2008

17:49

To:

Subject: tortuous

stricture in common bile duct

My son (who is 12) has more seemingly adult like

symptoms/consequences

of PSC than most of the kids I know so I thought I would ask this here.

A brief history of his bile duct history...

13 ERCPs for partial or total obstructions in his common bile duct

stents replaced frequently for years during the ERCPs

tons of sludge/stones each time he had the ERCPs

initial MRCP and first ERCP they found 2 very tight strictures and a

grossly dilated duct

last ERCP he had an extra big sphincterotomy cut done to try and

establish bile flow after so many obstructions and stents that kept

getting clogged after only a few weeks

the huge sphincterotomy along with higher doses of urso to thin out

bile, new antibiotic and probiotic regimin and g tube feeds have help

the quality of his bile somewhat

He also has some complicating factors- he has severe short bowel

syndrome (most of his small intestines gone, he has no ileocecal valve

and virtually no ileum (for bile salt absorption) so he has really

poor quality bile- thus the need for urso, antibiotics and questran)

He has had severe/acute pancreatitis 3 times and I suspect now has

chronic pancreatitis..not confirmed for certain...long story...

The recent finding found with the latest and greatest type of MRI

machine with all the Philips reps assisting to get some really good

images...showed the really obvious (even to my relatively untrained

eye) dilation and stricture that twisted around (were called tortuos) .

The GI called me himself within a few hours of the study, after having

looked at the films himself with the radiologist- so not a good sign.

I am wondering if anyone has had problems with chronic pancreatitis

that has caused a similar problems. The initial research I have been

doing seems to point towards pancreatic problems causing this or

caused by this ??. One expert we saw on biliary/liver disease- he

actually 'wrote the book' on pediatric liver disease (Dr Balistreri)

thought my son would need a permanent external drain for bile flow but

the former GI didn't want to go there.

Any thought/experience/ideas on what a tortuos (twisting kink)

stricture in the common bile duct could mean ? The duct was quite

obviously dilated above the stricture.

Lori

[Guest guest]

Lori,

Does your son still have his gallbladder? My

problems with sludge and clogging have been " solved " (or seem to

have) after my gallbladder was taken out. The sludge was coming from my

gallbladder.

Regards,

Chaim Boermeester, Israel

From:

[mailto: ] On Behalf Of wildwildtrips

Sent: Thursday, November 20, 2008

17:49

To:

Subject: tortuous

stricture in common bile duct

My son (who is 12) has more seemingly adult like

symptoms/consequences

of PSC than most of the kids I know so I thought I would ask this here.

A brief history of his bile duct history...

13 ERCPs for partial or total obstructions in his common bile duct

stents replaced frequently for years during the ERCPs

tons of sludge/stones each time he had the ERCPs

initial MRCP and first ERCP they found 2 very tight strictures and a

grossly dilated duct

last ERCP he had an extra big sphincterotomy cut done to try and

establish bile flow after so many obstructions and stents that kept

getting clogged after only a few weeks

the huge sphincterotomy along with higher doses of urso to thin out

bile, new antibiotic and probiotic regimin and g tube feeds have help

the quality of his bile somewhat

He also has some complicating factors- he has severe short bowel

syndrome (most of his small intestines gone, he has no ileocecal valve

and virtually no ileum (for bile salt absorption) so he has really

poor quality bile- thus the need for urso, antibiotics and questran)

He has had severe/acute pancreatitis 3 times and I suspect now has

chronic pancreatitis..not confirmed for certain...long story...

The recent finding found with the latest and greatest type of MRI

machine with all the Philips reps assisting to get some really good

images...showed the really obvious (even to my relatively untrained

eye) dilation and stricture that twisted around (were called tortuos) .

The GI called me himself within a few hours of the study, after having

looked at the films himself with the radiologist- so not a good sign.

I am wondering if anyone has had problems with chronic pancreatitis

that has caused a similar problems. The initial research I have been

doing seems to point towards pancreatic problems causing this or

caused by this ??. One expert we saw on biliary/liver disease- he

actually 'wrote the book' on pediatric liver disease (Dr Balistreri)

thought my son would need a permanent external drain for bile flow but

the former GI didn't want to go there.

Any thought/experience/ideas on what a tortuos (twisting kink)

stricture in the common bile duct could mean ? The duct was quite

obviously dilated above the stricture.

Lori